Whelp! It’s been a long time since I’ve written (anything), and that’s just got to change. It’s not, I must insist, that I’ve been doing nothing. In fact, I’ve been so busy that my little pea-head has been spinning. Luckily, these days, my head is in good shape, so there’s no lasting damage. In fact, the activity is keeping me at the top of my game, and I am feeling really good, my friends!
The last blog post was uploaded on July 29th. I’m beginning this one at beginning of October. That’s over two months, and is not OK. Sorry about that. But… In my defense, I’m just going to write exactly (the pertinent stuff anyway) what I’ve been doing. Perhaps you’ll forgive the laxitude. Here goes.
July 30th:
I had a call with an organization called Seniors Helping Seniors who are interested in having me come out to their location for a presentation and book sales event. This will be happening on October 22nd and is one of the few times I am currently booked to speak in the greater Boston area. I’d love to see some of you there. Please RSVP (in the link) so they know how many to expect.
August 4th:
I spoke with a representative from Eisai, who (as we know) are one of the US pharma companies behind the drug that’s changed my life, Leqembi. They want me to come to their facility in New Jersey to talk to their Alzheimer’s team about my experiences. They’ve already purchased a bunch of books. I’m honored, and this will be happening this coming week (as I write). I’m really excited about it. These talks (where I talk to scientists and researchers) are so much fun for me, and I learn a ton.
August 4th (still):
Just a regular old PCP appointment to confirm that I have not a single pressing health need! All of my bloodwork is normal. My hard work on my health over the past few years has really paid off.
August 5th:
Wendy and I flew to Evansville for the Mid-America Conference on Aging at the University of Southern Indiana.
While waiting for our flight at the airport, I did a conference call on the AD Pace project I’m on the steering committee for.
August 6th:
Day one of the conference. We went to the primary Keynote by Ann Basting, who is doing phenomenal work with art as a method of communication for people in the later stages of dementia. Here’s a fascinating Ted Talk she gave. It was a great keynote and I learned a lot. I recommend folks in the care industry look her up and try to incorporate some of her teachings into their units. It was also really nice to see my old(ish) friends from USI again. (And I’m going to look into doing a Ted Talk myself.)
Later that day, Kevin took Wendy and me to a really interesting little village called New Harmony where we had a lovely time meeting several of the locals. Kevin asked me to talk a little about caregiver support and communication to a group of around 15 people, and that went very well. They were a genuine and open group, all choosing to live a very close life together. I sold a few books, and ate some wonderful food! We were given a golf-cart tour of the town by our principal hosts, one of whom is in the early stages of Alzheimer’s. They heard me talk last time I was in the area and requested this informal gathering. The town itself is beautiful and has a really unique history. Check out the wikipedia page linked above.
August 7th:
The day of the big keynote. This was my first MAJOR paid gig, and I was really excited about it. It was well over an hour long, and Wendy came on at the end to help field questions. She was, as always, wonderful. Just to feed my rapidly bloating ego, I’m going to add just a few of the comments left:
These presenters were incredible. I hope anyone struggling with a diagnosis reads Sean’s book and is inspired to hope.
What a great keynote. He was very funny, heart-warming and engaging, and so was she.
This was a refreshingly real yet hopeful account of what it’s like to receive and live with a dementia diagnosis. Thanks for bringing them!
Would have liked to heard more from Wendy in her role as caregiver.
Thank you for sharing your personal story to improve experiences for others who are diagnosed with Alzheimer’s disease. Great attitude.
I can’t say enough good about this presentation. Such wonderful information presented by two excellent communicators; funny, warm and intelligent! Loved them, and their unique perspectives.
Sean and Wendy Terwilliger are fantastic speakers, writers, and advocates. They provide a unique first-hand experience from both patient and caregiver for Alzheimer’s They provide wisdom to both healthcare professionals, patients, and caregivers/family members on how to navigate the healthcare system, participate in clinical trials, never give up, and stay optimistic through terminal diagnoses. I would love to see them back again.
I love these types of presentations. It gives the listener a 1st row seat to how dementia affects a person and their caregivers.
The clear highlight of the day. What a gift to hear them both.
I can’t even begin to express how happy these kinds of comments make me. I do this kind of thing for a reason, and that’s to affect people. When I hear that I am successful, it gives me a great feeling of joy, and as we know, joy is an essential part of my self healing process with this disease. This was a great experience all around! I don’t yet have the video of the talk, but when I get it, I’ll put it on the ALZ Fired UP! youtube channel
The next day was a long travel day home, with a substantially delayed flight. A day off, and then Wendy and I were off to Vinalhaven, Maine for five days. While there, we went Kayaking (saw a bunch of seals, eagles, herons and more), ate good food, swam in the quarry, saw the Perseid meteor showers, sat outside in full dark sky conditions (amazing), watched glorious sunsets and generally relaxed. Except I had a bunch of follow up calls to make or receive, so I was a little too tied into my phone. And then…
August 13th:
Along with my friend Amy, from the Maine Chapter of the Alzheimer’s Association, I gave a presentation at the Vinalhaven Library, which you can watch here. It went really well, and I feel good about the way that I reached people on this isolated island. I left a copy of the book at the library, and it was a thrill to see it shelved!
It’s a really interesting thing, talking to folks who live in such an isolated (beautiful, for sure but a long way from a decent medical infrastructure) about options. This is something that somehow, we need to fix. Vinalhaven is an island about an hour and a half long ferry ride from Rockland, Maine. There are six ferries a day. There is, as far as I am aware, a single medical clinic on the island which is open 4.5 days per week. There is a neurologist (maybe more than one) in Rockport, which is around five miles from the ferry. There is an infusion center there as well. But as you can infer, it’s a really time constraining process. For me, when I was on Leqembi every two weeks, it was a 10 minute drive. For someone on island, it’s an entire day (plus the costs incurred for the ferry ride and (perhaps) taxi to the infusion center. It doesn’t make it easy. The new subcutaneous shot of Leqembi will be a game changer for folks, many of whom can’t really afford to take a full day off of work either, like this. And god forbid you don’t get on (or agree with) the neurologist there. There aren’t a lot of options. It makes me sad for them. (Incidentally, despite the smallish population there, the fact that someone has not yet opened an amazing record store called Vinyl Haven there makes me sad.)
On the way home from Maine a few days later, we paid a short visit to my old high school friend, Maude, who I hadn’t seen since I was 16. That’s (pulls out calculator…) 47 years. It was brief, but nice to connect.
August 17th-20th:
A small Walk To End Alzheimer’s shindig for another team, an unrelated doctors appointment, a conversation with a local business, Tandem Bagel, to arrange a book reading in September and a face-to-face meeting with our state senator, John Velis, who I met last year at the Walk, to discuss upcoming Alzheimer’s related legislation in Massachusetts. Sen. Velis has a close relationship with the disease, and promised to support the initiative. The bill, H.5621 has passed the Massachusetts house unanimously and has made it to the Senate Ways & Means committee for review. This bill would radically expand care for patients with Dementia, allow caregivers to be in hospital rooms past visiting hours, provide first responder training and more. Senator Velis also challenged me to come up with something new that could be codified so that he could present it. That’s cool!
August 21st:
Started the morning with a call from a new pal, Luke, from Texas. Luke has introduced me to the organization Voices of Alzheimer’s who also do grassroots advocacy, among other things. They’ve created a Bill of Rights for people with Dementia which is quite good. I’ve written one too, but it’s not quite ready for prime time. The tone of mine is a little more militant. I’m calling it a manifesto, and have to figure out the proper roll-out for it.
Then I had a call with BioGen, one of the partners behind Leqembi, to discuss being on a panel in September. This is super exciting stuff for me. I really like surrounding myself with people who know far more than I do to discuss what’s happening in the treatment world. I learn so much–and they claim they learn from me too. So I guess it’s a mutual thing! Excellent.
This was followed by a prep meeting with the American Association of Immunologists who, along with US Against Alzheimer’s, have invited me to go to Washington DC in September to do a congressional briefing on the importance of clinical research in disease prevention.
One of the speakers, Susan Kaech, PhD gave me the most concise explanation of the process on how immunological research was essential for the creation of most disease modifying therapies. It was full of science and fact, but not obscured by jargon. I was really impressed and was looking forward to talking with her at the briefing.
I cannot stress enough how important I believe this work is, and I’m thrilled to be beginning a relationship with the AAI and US Against (who I already do some work with on the AD Pace project).
August 27th:
I feel like I mentioned this before, but I can’t find it in my archive, so perhaps I didn’t. (Don’t worry, I’m not regressing or having hallucinations or anything like that. It’s just that it was important then, and I should have written about it, but clearly I didn’t.) So.. A year ago, I was put in touch (Thanks Meghan) with a young PhD from Harvard who was working on a grant for a clinical trial. We met, back when I was doing the transcranial stimulation trial (which I did write about, both as fiction and fact). Sadly back then, he lost funding for his work because of cuts to NIH grants, so we never moved forward on anything. However, he reached out again, with potential funding for a trial he’s trying to put together. We had a call today and he asked me to be the “community liaison” for the trial. This means, essentially, that I’ll offer observations on what is appropriate to ask of participants, how often they should expect to participate and other things that might directly affect the lives of enrollees. I’ve been saying for some time now that people living with the diseases being studied need to have a seat at any table where discussions about the disease are happening. (And this goes for government, financial, insurance, media and all other times representation is necessary.) So I’m pleased that not only is his work happening (or at least grant applications are open again) but that he’s thinking along these lines.
September 1st:
I had an uneventful flight to Washington DC, and met with some great folks from US Against Alzheimer’s, who were instrumental in my appointment to this briefing. We had a lovely dinner, and cemented the fact that we all wanted to do more work together.
September 2nd:
The panelists and crew met for coffee and walked over to the Hart Senate Building for the briefing which was held in the same room where supreme court justices are confirmed. I sat at one of the tables with the timer on the microphone, and it was all I could do to not shout “I DO NOT YIELD MY TIME TO THE GENTLEMAN FROM SOUTH CAROLINA” or some other nonsense. Thankfully for the sake of my future career as a public speaker and advocate, I was able to restrain myself. There is a nice rundown of the presentation here. I mentioned earlier about how impressed I was with Dr. Kaech over our zoom call, and I was doubly so by talking to her (and hearing her speak) in person. She’s wicked smart and totally passionate about the work she does, and she knows how to explain it to the laypeople who need to learn it from her. That’s a rare quality. The other panelists were all equally brilliant, and are doing incredible work. I’m intensely grateful for the opportunity to have my voice heard alongside such lofty people. Afterwards, they asked me to make a short video for them, which (of course) I did. Here it is!
September 9th:
Walk manager and friend Jami and I were on WWLP’s Mass Appeal, a local news broadcast, to talk about the Walk to End Alzheimer’s (coming up on October 25th, still time for donations here), which can be watched in all its glory right here! Funny “star” turn, after the taping (pre-recorded before airtime) the good Jami and I went for breakfast and while we were in the restaurant, the show aired. Slowly, heads turned and finally someone asked “is that YOU??”. It was fun!
September 14th:
On request, I went to a local library (I donated a copy of ALZ FIred Up!... You can too. I have bookplates that say donated by… on behalf of… if you want to buy one to send to a library. www.alzfiredup.com) to speak to a group of people from the National Active and Retired Federal Employees (NARF). It was a great talk, with a nice, engaged group of folks. I then drove into Boston where…
September 15th:
I was on a panel… An AMAZING panel with Phyllis Ferrell, an independent contractor in the Alzheimer’s and pharma world (amongst many other things) and Caitlin Rivet who is the Director of Clinical Operations at Tufts Medicine in Boston, at Biogen, who are one of the companies behind Leqembi. The panel was moderated by Eli Shobin who is an innovator at Biogen. It was a fantastic discussion revolving around the needs of those of us living with Alzheimer’s and the pace and future of drugs and care. It was informative and meaningful. About 50 or so people attended with another 200 or so watching via web stream. (No, I don’t have a copy!) I believe I’ve said this before (and I’ll have occasion to say it again in this very post a bit later) but I absolutely love speaking to scientists, researchers, doctors, students and teachers. I learn so much, and hopefully bring something good to their table as well. Phyllis and I connected on a deeper level, and already she has started introducing me to people who would never been in my orbit, which is great.
Because of her introductions, I’ll be going to New Orleans in October to be on a panel hosted by the Hosted by The New Orleans BioInnovation Center, followed by a chance to be in attendance at the BioChallenge 2026. This will be really cool. Wendy and I are looking forward to visiting the big easy one more time. (It’s too bad I don’t drink any more–brain health matters–but the eating (and hopefully music) will be great, as will the opportunity to work with yet another new demographic for me–those that are looking at non-medical interventions for Alzheimer’s. I’ve done stuff, as you know, for Beacon40 before, so am already aware of what interesting things can be done outside the pharma space. It’s going to be, as has been mentioned in a book I wrote, many different things combined that will eventually constitute the cure for Alzheimer’s and I will play, gladly, in any space that is trying.
After that, also because of Phyllis’ generous introductions, I’ll be going to Washington DC again. This time to speak at a program called From Breakthroughs to Access: The Future of Alzheimer’s Treatment. This is being put on by The Clinical Trial Recruitment Lab at The University of Southern California. Again. Super exciting, and both of these things are well outside of my “normal” world, and I’m immensely grateful for the opportunity. Alz Fired Up! about it, you might say…
September 16th:
I did a very sparsely attended book reading at a local bagel shop, Tandem Bagels, who generously donated their conference room and a tray of bagels and some coffee.
While the attendance was low, it was a good read, and an excellent learning experience for me, both as a reader (I really like the stuff I picked to read and the accompanying slide show) and as someone who has to learn how to better market himself, since it’s what I appear to be doing. Writing about it now, after it’s happened is only informational, not helpful for business.
After that I was on a zoom meeting with several representatives from the Alzheimer’s Association, some local advocates and people from the office of US Representative Richard Neal. We’d been trying for a bit, to get this meeting set up, and it happened on the 16th, ironically, the same day that the bill we’ve been talking about, the ASAP Act unanimously passed through the House Ways & Means committee. So, instead of pushing Rep. Neal’s aids to get him to sponsor the bill, instead we talked of the need to get this important measure to a full vote… asap… so it could be codified.
Finally, that night we went to see the great Bettye Lavette at a local club. I wish she had performed with a full band–she had only a keyboard player–but she is a really dynamic performer, and despite having a cold was able to sing for nearly two hours. It was very much like this, which was recorded about two weeks prior.
September 17th:
I started the morning off with a call from Healthy Women, who are working on a project called This Is ALZ. It’s a great project seeking to raise awareness and reduce stigma. Women are twice as likely to get Alzheimer’s, which is an alarming statistic. We haven’t yet decided where I’ll fit into their narrative, but I am eager to help.
After that I was interviewed by the good folks from Being Patient, who are a fantastic resource. Intellectually, I hate the moniker of “patient”, because I do not consider myself one (for those who’ve read ALZ Fired Up!, you know of my struggles with that and other nomenclatures that have been foisted upon those of us carrying the burden of this disease) but all things considered, they are great. That interview resulted in this article and video which I’m really happy with. They singled out a quote from me which I love:
“I exist because I have a mind… There’s nothing that you could take from me that would be greater than taking my sense of who I am and my ability to process the world. And so I was just absolutely devastated by the diagnosis.”
September 18th:
Wendy and I went to see a youngster named Amani Burnham. By watching this clip, you might think we were headed off to a night of ripping guitar blues by a young prodigy. Well… we did see a young guitar prodigy, but besides a few moments, it was not a blues night. Not a bad night, per se, but different than we expected. Still, I’d keep an ear out on this kid. He’s got great tone and presence and can play the dickens out of his guitar. It wasn’t great but it was fun.
September 23rd:
Bright and early I was on, with my friend Jami again, a local radio/tv show for an hour. It can be seen here! It was fun, and if you watch it, you’ll learn some interesting stuff about my life. You’ll also learn that I’ll be on again for a solo show about my post diagnosis journey. You’ll also learn that I might very well get a radio show on that station myself! My lovely wife implores me to just “make it about the freaking music, OK? No ALZHEIMER’S STUFF. FOR ONCE!” and I agree. I had a lot of fun when I was doing music stuff on the blog, and now I might be able to translate that to the air (and web) ways. I’ll post links and stuff when it’s real.
Immediately after the taping Wendy and I drove down to New Jersey where I…
September 24th:
Spoke to a bunch of scientists, researchers and others from Eisai, who, as we all know, is the other company involved with the creation and distribution of Lecanemab. It was a great talk to about 100 people in the room and several hundred more on-line. The really nice thing is that the company bought a bunch of copies of ALZ Fired Up! to give to those that attended the talk. Here’s a shot of me signing. Ignore the gaping head wound. I had a run-in with an angry razorblade when grooming my head.
It is honestly so incredibly gratifying to me that people in the industry (science, pharma, education, medical practitioners and more) are actually wanting to hear what I have to say. I’ve been working really hard at this new late-stage career and it’s finally beginning to show some results. In fact, I’ve just had some really exciting news, which I will pass on as soon as the ink is dry.
September 25th:
This has nothing to do with anything, but I had been subpoenaed to be deposed in a lawsuit about a piece of computer hardware I purchased way back in 2002. It was a 3 hour process and was actually pretty cool to be part of, never having been involved in much like that before. The process of questioning, the follow-ups and the procedural nature of the thing were fascinating. It was a colossal waste of my time, but still fun, in a perverse way. I hope the good guys win.
Also, I signed up for my Medicare plan. Forced. Not too happy about it. But done. It actually will open up a lot of medical doors for me should I want to go through them, as I will no longer be constrained to an HMO plan in my state. This will help when I want to spend more time with Jonas and Pickles in Arizona.
Lots of other things have happened. I’ve been working on a project with the wonderful Michelle Memran to bring to light the issues of stigma surrounding Alzheimer’s and other dementias. We, all of us involved, did around 10 hours of taping over zoom calls and Michelle and her team edited up some good stuff. My individual piece is here, and the group piece is here. If you go to Michelle’s Let This Be A Symphony channel, you can see more of her work, as well as the individual pieces of others that I worked with. It was a great, and truly meaningful project.
I did a bunch of Walk To End Alzheimer’s related stuff, including going again, to a Middle School I used to work at, Hillside School, who have formed a fundraising team for their local walk. I gave them a little educational talk, and spoke to their dean about working next year to build a basic brain health (and how do I deal with those who are living with…) curriculum for them.
Work with the AD-Pace Steering Committee continues. We are just getting started on round 3. Round 2 was recently published. You can read it, should you desire, here.
I’ve got a bunch of other gigs lined up including the following publicly accessible ones in Masachusetts. I’d love to see some friendly faces at them:
10/14/26, 5:30PM Stoneham, MA
10/21/26 4:30 Greenfield, MA - The Arbors. No flyer yet. Their phone number is: (413) 774-4400
10/22/26 4:00 Waltham MA - Seniors Helping Seniors
https://shsboston.com/event/living-fully-with-alzheimers-a-story-of-resilience-advocacy-hope/
11/4/26 4:00 Concord, MA
I’m really going to buckle down and record the audio-book version of ALZ Fired Up! I would love to get this out to the world by year’s end. Amongst everything else. Including getting my elbows wet with the novel.
This is a plea, especially if you liked it, to drop a review of ALZ Fired Up! on Amazon (if you bought it there or not) and/or Goodreads. Reviews are how the algorithms place the books when you search.
I’ve learned and done so much in these last two months, that it’s been a little overwhelming. But the bottom line is that I feel great. My brain is firing well, my health is good and I am truly happy with the path my life is taking.
I’m going to end this with a heartfelt thanks to all of you for standing by, for reading this missive and for your continued interest.
Sean